Governing Body
Ms. Slaveya KOSTADINOVA – President and mother of a child with spina bifida and hydrocephalus
Ms. Victorya Nedyalkova – Member of Governing Body
Ms. Antoaneta Ivanova – Member of Governing Body and mother of a child with hydrocephalus

About the association
Spina Bifida and Hydrocephalus Bulgaria (SBHB) is an association formed by parents of children with spina bifida and hydrocephalus. SBHB is a natural, modern and adequate way to meet the growing needs of the patient community in terms of support and assistance, access to information, exchange of experience and ideas, protection of common interests before state institutions. Other priorities of SBHB include primary prevention of spina bifida and hydrocephaly, integration and improvement of quality of life of patients.
Since March 2012 SBHB is a member of the International Federation for Spina Bifida and Hydrocephalus.

Purposes
National Association Of Gaucher Disease is a non-governmental organisation with non-economic purpose.

Its main purposes are:
• collecting funds for treatment and supporting of people of lizozome diseases with effect of accumulation (Gaucher disease)
• establishing contacts with similar organisations in the country and abroad
• cooperating for the respect of the human rights of Gaucher Disease patients

Description:
DEBRA Bulgaria is a non-governmental organisation uniting Epidermolysis Bullosa patients, their relatives and supporters, medical specialists. The association aims:
• to assure the fundamental rights of EB patients – access to adequate and quality healthcare
• to help their social integration
• to provide information about EB
• to support patients with EB and their families

Establish a national work plan for treatment and prophylaxis and adequate policies for the treatment of haemophilia A, hemophilia B, von Villebrand disease and other rare coagulopathies;

Improving the diagnosis, treatment and control of the treatment of patients with haemophilia A, hemophilia B, von Villebrand disease and other rare coagulopathies;

Increasing the patient’s capacity (knowledge and skills) about the disease;

Raising the capacity (knowledge and skills of the disease) of parents of children suffering from haemophilia A, haemophilia B, von Villebrand disease and other rare coagulopathies;

Building a network between physiotherapists and rehabilitators working with patients with haemophilia, von Villebrand disease and other rare coagulopathies to improve the quality of life of these patients;

Familiarity with Haemophilia A, Haemophilia B, Von Villebrand disease and other rare coagulopathies and informing about the problems associated with them;

Overcome and counteract discrimination and stigmatization of patients with haemophilia A, hemophilia B, von Villebrand disease and other rare coagulopathies;

Establish contacts with similar organizations in the country and abroad

Establishment of contacts and permanent dialogue between the Association and the governing bodies and institutions in the Republic of Bulgaria related to this disease / Ministry of Health, Ministry of Labor and Social Policy, National Health Insurance Fund, Drug Agency, National Labor Expert Medical Commission, etc. /

Undertaking measures to overcome the emotional consequences of the disease, professional retraining and social rehabilitation of people suffering from Williams-Boiren Syndrome

Provide funds for the treatment and support of patients suffering from Williams-Boiren Syndrome in Bulgaria and abroad.

Means to help and assist in communicating between people suffering from Williams-Boiren Syndrome and state institutions

Understanding the public with the problems of people suffering from Williams-Boyer syndrome, supporting social rehabilitation and professional orientation of people suffering from Williams-Boiren Syndrome

Organizes and supports the realization of research projects in the field of treatment of Williams-Boyer’s Syndrome

Organizes and supports the training in the country and abroad of specialists in the study and treatment of Williams-Boirens Syndrome

Assist the specialized state and medical authorities and organizations for the establishment and operation of laboratories, offices and centers for treatment and research of the disease

Organizes scientific meetings, symposia, congresses, conferences, sponsors publishing activities in the field of diagnosis, treatment and rehabilitation of Williams-Boyer Syndrome

Creates international contacts for collaborative developments, for the work and specialization of Bulgarian scholars abroad for the treatment of patients suffering from Williams-Boiren Syndrome

Provides support to research, educational and other institutions whose activities are related to the association
It opens permanent and temporary information centers in the country and abroad and other analogous structures in accordance with the Bulgarian legislation and the host country legislation

He maintains contacts and cooperates with specialized information centers on rare diseases in connection with the exchange of information on people suffering from Williams-Boyer’s Syndrome

Description:
The association was created in June 2007. Its members are patients from all ages, their relatives. It is a member of the National Alliance of People with Rare Diseases. The association is lobbying for the adequate medical treatment of the mucopolysaccharidosis patients and the respect of their rights.

More about the association:
The work of the association is aimed at supporting the prevention, early detection, diagnosis and treatment of Pituitary Anesthesia and other similar diseases associated with growth hormone disorders as well as disease-related complications, supporting the social rehabilitation of patients suffering from this disease , enhancing the health culture of the population, raising the qualification of medical staff and promoting the novelties in medicine, maintaining information websites, undertaking the actions to protect the rights of patients and any other activity.